Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Extreme cases only in U.K.?

Discussion in 'General ME/CFS News' started by Boule de feu, Feb 27, 2012.

  1. Boule de feu

    Boule de feu Senior Member

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    I have never seen an extreme case of ME portrayed in the canadian media except for one in a U.S. documentary - sorry my mind is not there today, was it Ryan's story?
    They all seem to come from U.K. Why is that? What makes ME there so severe to the point where patients die from it? I'm thinking of Lynn and Sophia's stories, and now Lois.
     
  2. Esther12

    Esther12 Senior Member

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    The medical establishment in the UK seems particularly committed to a biopsychosocial approach, and this can lead to all sorts of problems. Maybe that's part of it? It seems that it often leads to a breakdown in the relationship between patients and doctors, which then means that other medical problems can go untreated, etc, and something of a viscous cycle occurs.

    It's hard to say though, and we really don't have any data that lets us judge the impact adopting a biopsychosocial approach to CFS has had.
     
    Dolphin and markmc20001 like this.
  3. Boule de feu

    Boule de feu Senior Member

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    Could this approach make all the difference in the world? I'm pretty sure that if someone would offer me GET therapy, I would die shortly afterwards. Pffff! They would probably say that I need CBT for even thinking like this in the first place. With this illness, we are not even allowed to make our own decisions. Everyone else seem to know what is good for us.

    Canada is no different, i doubt it is better equipped to provide any type of treatment for us.
     
    Kati likes this.
  4. Calathea

    Calathea Senior Member

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    What is reported in the media is not an accurate depiction of what is going on in the world, especially with ME.
     
  5. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Haha, no kidding!!! ;)

    not laughing at you, but the complete asshattery of the media, jeesh
    For those who want to see what much of the media is REALLY like, go read up on or listen/watch the "Levenson Inquiry" in UK into the tabloid hacking etc
    now it's being claimed (and many of us suspected for ages) they had politicans, cops, military, intelligence staff, bureacrats etc all on the take to give them "salacious gossip", not vital news items of public worth
    Anyone else bribed MI5 officers, they'd get 15 to 30 years in jail....

    pardon the language but "Boobs, ass, drugs, bombs, carnage and Freddy Starr Ate My Hamster stupid stuff" is what much of the media is: a circus of lies and bullcrap to distract us all

    ME is inconvenient so it is pushe dinto a corner
    We don't murder "dissidents" in the West, they just get distanced from being heard, or made laughing stocks of (great bit of pyschology)
     
    health_seeker likes this.
  6. mellster

    mellster Marco

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    Yeah, but you have to give it to them that it works much better than killing dissidents. It's the same with protesters of any kind, if they protest in countries (currently) misaligned with the West, then they are heroes (not saying they aren't) that need to be armed and rescued, but if people protest in Western countries, like G20or occupy protesters, then they are portrayed as a bunch of lunatic chaotic anarchists that need to be ridiculed, tear-gassed, pepper sprayed and removed from public premises. Still better than killing them though.. ;)

     
  7. L'engle

    L'engle moogle

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    Canada
    :(:(I hope it doesn't happen here, and I hope it stops in the UK, too.:(:(
     
  8. allyb

    allyb Senior Member

    Voices from the shadows depicts more severe cases from the UK

    It certainly seems so in this documentary Esther

    I see the commonality in most of the cases featured is that they were forced by services, medical, social and psychiatric, to do physical things that exacerbated their condition and yes Boule de feu to the extent they lost their lives.

    Sadly this factual, revealing phenomenal DVD is being so successfully kept out of the media, an utter utter travesty that defies all logic.
    Any Ideas how to get it out there anyone?

    because we will be hearing about more and more deaths, I am positive.

    Saddest regards
    allyb
     
  9. taniaaust1

    taniaaust1

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    Sth Australia
    No not just the UK, but in other countries too. There does seem to be a common theme of these people being treated very badly by the medical profession. Its the disbelief from the medical profession which is often killing these people and what they've been put throu.

    Another case is the young Australian Alison Hunter who was only a teen when she died.

    Her memorial fund has greatly helped the Australian ME/CFS situation here which probably would be even worst then it is otherwise eg providing funding for biomedical research studies, holding big ME/CFS conferences in which ME specialists from outside of Australia are brought in to give talks both to other doctors and to the general public (eg Dr Peterson) etc


    http://www.ahmf.org/smh040502.html I think from my memory she was 19? (maybe it was 17) when she died. (a more full story is online somewhere but I cant find it right now, its quite horrific)

    http://www.ahmf.org/

    .....

    There is also one who lived not far from me who I believe had ME/CFS but was never diagnosed (he did end up being diagnosed with FM) who died in his early 50s.

    He was treated horrifically by my local hospital.. he was suffering so much weakness and exhaustion that he was sleeping all the time and the hospital wouldnt wake him up for meals but would just take away his food tray when they found it uneatten, (my father a few times took meals in for him as he was hungry.. he'd wake up to find they'd given and taken his meal away and thrown it out so he'd missed dinner yet again. The hospital as he'd refused to leave so they'd said they'd keep him in a week more.. didnt care).

    The hospital admitted him a few times (he was in and out of hospital) only to keep kicking him out, saying he was fine and not believing him or that he had a serious issue.

    A week or 2 after the last time they kicked him out and sent him home unable to take care of himself he was dead .. (just like how Ive been kicked out from hospital and sent home unable to look after myself)..

    he developed serious liver issues so was readmitted and finally taken serious that he was sick, his liver completely packed up and within a week was dead. (he turned to more alcohol to drown his pain and issues and it made him worst.. this same guy had testicular cancer when he was in his 20s but had had them removed).

    This poor guy.. I'd recognised him as a possible ME/CFS case for years even before they finally gave him a FM diagnoses (FM people do not sleep as much as he did!! He hardly cooked, he hardly did a thing, he didnt work.. and he wasnt depressed..he never came across to me as depressed).

    (Note.. the doctors in my area never diagnosed my ME/CFS either.. I ended up diagnosing myself and then seeking out a specialist in the city).

    His case of undiagnosed ME/CFS and death.. makes me wonder how many others are dying... without awareness of what they have (I tried to tell him once I thought he had this but he didnt believe it as he thought this illness was a psych one.. then a short time later he ended up with a FM diagnoses).
     
    markmc20001 likes this.
  10. Foggy

    Foggy

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    Hello Taniaaust1

    Least Sth Australia recognises ME - try living in Western Australia. Local SA ME/CFS society is more medical orientated, you should see the perth one? Talk about charlatan central!

    Drs in my area diagnosed ME, but they never heard of a SPECT scan for it. I had to pursue that one for myself.

    The local media here reported an ME sufferer that was pretty much no better than a severe stroke patient. Stuck in a darkened room or something.

    I'm also on a couple of UK ME sites, there does seem better recognition of ME in England, but Wales,Scotland and Ireland sadly lag behind.
     
  11. alex3619

    alex3619 Senior Member

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    In a chat with allyb something came up that allyb wanted me to comment on. I have been talking to people about this DVD. It occurs to me that we should be approaching producers etc. of TV shows that show this kind of thing to encourage them to consider airing it on TV. In Australia that show would be Four Corners, an in-depth investigative reporting TV show, the only one with the kind of scope and depth needed. Where in your media, in your country, is there a similar show you can approach? Please think about it. Bye,Alex
     
  12. Camilla

    Camilla

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    There are severe cases of ME/CFS in Scandinavia, too. I haven't heard of deaths, but "living deaths" like spending year after year in a dark room, unable to move. There are quite a few severely ill patients in Norway, and some in Sweden.

    There's likely a hidden number of people too, who haven't been correctly diagnosed.
     
  13. Boule de feu

    Boule de feu Senior Member

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    There are the horrible and extreme cases but there also all the ones who die too early from all kinds of stuff and we don't know why. I can't remember who said that ME patients were dying 25 years younger than the general population. Was it Dr. Klimas?

    I remember when my GP told me I had ME.
    He started with "I have good news and bad news".
    The good news is that you will die very old, you'll probably live up to 88!
    The bad news is that you have an horrible disease and we have no cure for it."

    He could have added: You will be stuck with it for the rest of your life. (which makes it a very long life sentence)

    I wonder if he knew about the 25 years difference but he did not want to upset me more.
    That will make me 63...
    I am almost 48 now and I already feel like I'm 80 years old...
     
  14. ukxmrv

    ukxmrv Senior Member

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    Severe cases are very rarely reported in the UK except when we die and there are cirumstances that the coroner needs to report on. When we die for example of cancer after decades of being ill it would not be reported.

    Until there is an "interesting" death or similar event the media ignores the severely affected and TV programs and media reports focus on the less severely affected and in particular are used by the LP and other snake-oil sellers to advertise. It's very unsual to see a severe sufferer unless there is an "angle" involved that someone benefits from or the newspapers think is sensational.
     
    Wildcat likes this.
  15. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    "Severe sufferer? I never met one. They don't exist, its just fatigue."

    To get the media interested you have to break the barrier of ignorance.
     
    ahimsa likes this.
  16. Boule de feu

    Boule de feu Senior Member

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    Very true. It is happening here, too.
    But, i've never heard that someone died of CFS here. (ME does not exist in Canada, in fact ME has never been covered by the media)
     
  17. Boule de feu

    Boule de feu Senior Member

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    Meet one now. LOL
    ME!
    I have been totally housebound for the last seven years, half time bed bound.
    I get about 12 days of rotten time per month and then, i'm in bed the rest of the time.
    I wish they would cover my life and what it is like.
     
  18. Calathea

    Calathea Senior Member

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    Bear in mind that as far as we know, ME has a noticeable death rate. We can think of what, three deaths reported in the UK that we know of? Let's say that we follow the rate I read here somewhere of 3% of people dying of ME, and 250,000 people in the UK having ME, then that's 75,000 deaths, of which we have heard about 3, so that's 0.00004% of deaths being reported. The difference between 0.00004% of deaths being reported and 0% of deaths being reported is negligible. My stats are probably misinformed, I don't know how to adjust for how many deaths there are over a given period of time or even what the period of time is, but I think it would still end up being such a tiny percentage of deaths being reported that it's completely useless to extrapolate data from.
     
    Wildcat likes this.
  19. Boule de feu

    Boule de feu Senior Member

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    75,000 deaths and only one death certificate which has ME as a cause of death on it. (that we know of?)
    It's pretty pretty sad.
     
  20. Calathea

    Calathea Senior Member

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    The 75,000 deaths is a wild guess, bear in mind - don't go running around quoting that as a real statistic! But whatever the number, yes, we do have a problem with ME not being listed as the cause of death. Does anyone know what has happened historically with that issue and AIDS, since with AIDS you don't die directly from the AIDS, you die from another condition the AIDS has let in? Are AIDS patients being marked down as dying of AIDS, or as dying of pneumonia (or whatever causes individual deaths)?
     
    taniaaust1 likes this.

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